Mayo Clinic Connect
I would like to know more about others’ experiences with having a Thyroid Lobectomy/Partial Thyroidectomy to remove Hurtle cells from their thyroid using the robotic surgery, which removes the nodule through an armpit incision.
Hi, @kellyann — welcome to Mayo Clinic Connect.
I'd like to introduce you to @maxinej @anna63 @gman007 @bartlett36 @crummens @adriennef @marydwyer51, who may have some experiences to share related to Hurthle cells, or partial or total thyroidectomy.
Are you wondering about this procedure for yourself? If so, will you share a bit about how the Hurthle cells were discovered?
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Yes, I was interested for myself. My Hurthle cells were discovered through an MRI for a Lypoma on the back of my neck in April 2018.
My Lypoma surgeon wanted to make sure the mass wasn't intruding my spine and the Thyroid nodule was discovered and I was recommended for an FNA biopsy; that is when the Hurthle cells were discovered.
I am having a Transoral Thyroid Lobectomy with Dr. Travis McKenzie on July 26th. If the nodule is benign I will have a small incision on my inner lip; if it's malignant, I will have to have an additional incision (traditional) on my neck to remove all of my thyroid.
Dr. Travis McKenzie will complete my complete surgery in one procedure; most places outside of Mayo do this in 2 separate surgeries.
I am very thankful to be able to have this done in ONE SURGERY.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator
Hi, @kellyann — wow — that is fortunate you had the MRI and the Hurthle cells were discovered. That is also a great thing you will be able to have just one surgery instead of two.
I'd also like to introduce you to a few others who might have some words of wisdom about partial or total thyroidectomies, like @connieb_fromil @sepdvm @oldkarl @whiterose67 @shoregal45 @steeldove @crummens @grandmajan. @hopeful33250 may also have some insights. Hoping you can all meet up here on this thread.
Your surgery is soon … only about two weeks away. How are you feeling about it? Any concerns?
Liked by Teresa, Volunteer Mentor, kellyann
I am glad that you posted on Connect. You have had a remarkable journey in discovery the Hurthle cells and finding the right doctor to perform the surgery. While I do have some thyroid nodules, they have never been looked at all that close and do not seem to be a problem. However, I've also had 3 surgeries for a rare form of slow growing malignancy (Neuroendocrine Tumors) so the thought about the possible problem with the thyroid nodules is always present.
I look forward to reading your posts as you anticipate your upcoming surgery and to hear about the results after your surgery.
Liked by Lisa Lucier, Connect Moderator, kellyann
Severe bloating and gas daily following thyroidectomy for multinodular goiter. Switched from generic levothyroxine to Brand Tirosent with no improvement. Celiac negative and H.pylori negative. Has anyone started liothyronine (T3) for GI issues following thyroidectomy?
Hello @jmk1 and welcome to Mayo Clinic Connect!
I would like to introduce you to two members who have both talked about taking liothyronine- @jmk1 and @sucante in hopes that they will share their experiences with you.
How long ago did you have your thyroidectomy?
Liked by Lisa Lucier, Connect Moderator
Thyroidectomy was 18 months ago. The severe gas and bloating started about 4 months following surgery. How does one find an endocrinologist that would consider liothyronine?
Hi, @jmk1 – sorry to hear you are having severe gas and bloating after your thyroidectomy.
As far as finding an endocrinologist who would consider liothyronine, used for severe hypothyroidism, I'd like to invite members like @peetiepie @macierubida @michellecrcrn @darlia and @amtxo1989 to this conversation to see if they have some thoughts for you. Hoping they may also have some insights on the gas and bloating following the surgery.
Has anything helped your gastrointestinal issues thus far, @jmk1?
I live in Iowa, close to SD. I have found an AMAZING doctor in Sioux Falls SD. He participates in the studies listed in STTM (Stop the Thyroid Madness) project. I would be happy to pass along info, if you are anywhere close to that area.
I can tell you that my first two tries with T3 only were not successful. I am currently on my third try,after I had my cortisol levels checked and had results which showed that I needed to lower my cortisol. I went on a supplement to help with cortisol and I waited several symptomatic weeks before I started my T3. It has been an extremely SLOW process, very low doses of T3 to start. I am on week 2 of my T3, 3rd attempt, and I am feeling amazing. I did have alot of symptoms such as bloating, etc when I started my T3 treatment I was very uncomfortable with my third attempt, however I decided to try to push through and I am glad I did as I am feeling so much better.
I just had my cortisol levels checked and am waiting for the results. Over the past 18 months I have tried dicyclomine, 2 different SSRI drugs, and the FODMAP diet (still on it though doesn't seem to improve the bloating) but the bloating just gets worse. It is to the point that sometimes I feel like I might vomit because the gas is stuck in my stomach and upper intestinal track. I just moved in June so have started with a new doctor and new insurance. Prior to that time I had the same PCP and Mayo Rochester for my specialist.
I was hyperthyroid for 7 years due to multinodular thyroid before having it removed. I have had 1 upper and 2 lower endoscopies and a camera capsule and it showed mild chronic irritation.
I started on ashwaganda for my high cortisol and switched from T4 to T3 and my boating is almost gone.
my cortisol level was low (6), which is the very bottom of the normal range. It isn't Addison's but not sure how it plays into my GI bloating issues and being on T4 because of a thyroidectomy.
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